Howard has ALS, a horrible and debilitating disease in which there is no treatment or cure. This insidious disease slowly robs a person of his ability to make muscle cells and clearly his strength, eventually leading to muscle waste to the Nth degree. If this isn’t enough, you might not have even thought about all the places muscle coordination and strength is involved in our very vital way of living, like the simple act of swallowing. Swallowing your spit and food down the right tube, and breathing air through the other tube down to your lungs. Imagine losing this level of coordination.
Which leads me to this conversation with Howard today, and here was his response, “I don’t have to worry about terrorists or my wife killing me, no, the FDA is killing me instead. They refuse to allow clinical trials and more open studies and research to happen, I will die and it will be because of the bureaucracy from our government and FDA together. Not because I couldn’t find someone to help me.”
Here are three very short audio pieces from today. Please take out your tissue and keep in hand. Really.
https://soundcloud.com/elinor-silverstein/sets/the-fda-is-killing-me
This wonderful man and his family mean a lot to me and I will do everything I can to help him.
Elinor Silverstein, elinor@elinorsilverstein.com www.onstickytopics.com
